I’m thinking it’s time to get a private test and to see someone to explain it all to me.
My symptoms are awful at the moment, my brain is struggling to get my head around all of this, whereas this would not have been a problem in the past! Makes it even harder to help myself.
My body aches all over, my sinuses are always blocked, my voice is hoarse and throat sensitive to touch, tongue is scalloped and I’m still tired most of the time, I’m normally in bed before 9pm and that’s only from trying to keep myself up.
I also have a poorly 80 year old mum and borderline dementia dad who live on an island in Scotland 400 miles away!! I need to be well 😣
If I get a private blood test, do they explain the results or do I then need to book with a specialist? Or can I go direct to a specialist- Endocrinologist?!
Thanks to everyone on here for you help and taking the time to reply ☺️
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LouieHusky
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Was this most recent test early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test
Just testing TSH is totally inadequate as I explained in previous post here
I take supplements everyday- I alternate between Seven Seas Omega 3 Multivitamins Woman 50+ and Hey Nutrition Thyroid Complex. I do alternate days. They cover everything I think. Maybe there’s better alternative?
My brand of Levothyroxine has recently been changed from Accord to Crescent and I have been on 75mg for 5-6 months. It has taken nearly a year to get from 25mg to 75mg.
I have always had early morning tests with nothing to eat & only water. And missing a dose for 24hrs as recommended.
From looking at all my tests they have only ever tested B12 which was 605 ng/l in June 24. (Range 197-771)
Most contain iodine not recommended when on levothyroxine as this contains all the iodine you need
Iron - never supplement unless tested. Iron is toxic in excess. Post menopause, iron levels naturally increase
Test vitamin D, folate, B12 and ferritin and only supplement what’s necessary
Stop all supplements that contain biotin 5-7 days before all blood tests as biotin is used in lots of lab equipment and biotin supplements can falsely affect test results
My brand of Levothyroxine has recently been changed from Accord to Crescent and I have been on 75mg for 5-6 months. It has taken nearly a year to get from 25mg to 75mg.
Crescent is relatively new brand. Very few members have received it so far
Are you getting 75mcg dose tablets or 50mcg plus 25mcg tablets
Many people find Levothyroxine brands are not interchangeable.
Bloods should be retested 6-8 weeks after changing brand levothyroxine
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
My body aches all over, my sinuses are always blocked, my voice is hoarse and throat sensitive to touch, tongue is scalloped and I’m still tired most of the time,
Tongue scalloped suggests low B12
Joint pain suggests low vitamin D
Sinus suggests lactose/dairy intolerance……very common to develop dairy and/or gluten intolerance on levothyroxine, when cause of your hypothyroidism is autoimmune
If I get a private blood test, do they explain the results or do I then need to book with a specialist? Or can I go direct to a specialist- Endocrinologist?!
Get a full thyroid and vitamin test via Medichecks or Blue horizon
Come back with new post here once you have results
Members can advise on next steps
If vitamin levels are deficient GP should prescribe supplements. (But they often don’t)
If vitamins are low you should self supplement to improve to GOOD levels ….then retest again in 2-4 months
Vitamin D at least over 80nmol
Serum B12 over 500
Active B12 over 70 (private testing only)
Folate at top of range
Ferritin at least over 70
If thyroid antibodies are over range this confirms cause is autoimmune disease. Get coeliac blood test via GP BEFORE considering trial on gluten free diet
Thyroid levels
Looking for Ft4 and Ft3 to be at least 60-70% through range
How much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
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